Brandt: Improving support & care for dementia caregivers

“Overwhelming” is rarely an understatement, but for families caring for loved ones with dementia, that’s exactly what it feels like. And we need help.

My husband, Mike, and I were just 29 years old when we learned he had frontotemporal dementia, the same disease Bruce Willis and Wendy Williams currently live with. Three weeks later, my father, a veteran, was diagnosed with Alzheimer’s disease at age 59. In less than a month, dementia altered the trajectory of our lives forever.

I was now caring for my one-year-old son, Noah, my husband, and my dad, all while trying to balance other essential needs — attending medical appointments, navigating new family dynamics, and maintaining a household. The mental, emotional, physical, and financial stress was constant and so all-consuming that I had to leave my job to juggle it all.

Over 130,000 other Massachusetts families face similar challenges as they too care for loved ones with Alzheimer’s; a number projected to grow. Part of this is attributable to Massachusetts’ aging population, with more residents over age 60 than under age 20, according to the Massachusetts Councils on Aging. Nationwide, over 6.7 million Americans live with Alzheimer’s, a number the Centers for Disease Control and Prevention projects to more than double by 2060.

Ironically, this collectively large number of families often feel alone. Isolation is extraordinarily detrimental to caregivers; it compounds physical, mental, and emotional stress levels and increases the risk of caregiver burnout. Stigma, unfortunately, can still exist surrounding dementia, both for the person living with it and their family caregivers. This stigma causes them to keep their struggles private, but this just leads to greater challenges.

So, how do we make things better?

Connecting caregivers with education is vital. Virtually no one is prepared to care for a loved one with dementia, even if they’ve previously cared for someone with a different illness. Imagine being thrust into a job that you never applied for and feel totally unqualified to handle because you didn’t receive training and where the hours are 24/7; that’s what it feels like. Teaching caregivers how and where to get help — from building a care team to accessing support services — eases that stress.

Here in Boston on June 12, the Alzheimer’s Foundation of America is hosting a free educational conference where caregivers can learn about these and other important topics (I am one of the speakers). Visit www.alzfdn.org/tour to learn more and register.

Expanding and enhancing government-funded caregiver support services is vital. Being forced to abandon my career to care for my husband had swift financial consequences. The loss of income and increase in care costs led to spending every dollar of our retirement fund, depleting our savings, and losing our home to foreclosure. I relied on the social safety net to make ends meet. Federal, state, and local policymakers must prioritize protecting caregivers’ wellbeing while they care for our most vulnerable community members.

Something everyone can, and should, do is simply talk about it. Many caregivers are uncomfortable seeking help, but advocating for yourself is also advocating for your loved one. Discuss your circumstances and allow yourself to ask for that support in whatever way feels right. Often, others want to help but don’t know how. Be specific about what would be helpful: “Can you please spend an hour with Dad while I go grocery shopping?” Take advantage of free professional resources, such as the Alzheimer’s Foundation of America’s Helpline (866-232-8484) or those offered by Massachusetts General Hospital (where I work).

If you know a dementia caregiver, simply reaching out to see how they are doing makes a tremendous difference. It helps remind them that they’re not alone. Small gestures like that have a giant impact.

Former First Lady Rosalynn Carter, who lived with dementia herself, once said “There are only four kinds of people in the world –– those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” This issue will continue to affect many more families. Dementia coming into your life should not mean that joy must go out. It’s up to all of us to help make that possible.

Katie Brandt, a dementia care expert and educator who lives in the Boston area, will be a speaker at the Alzheimer’s Foundation of America’s free educational conference in Boston on June 12.

 

 

 

 

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